 |
May 2009 |
Message: Happy Mother’s Day to Meby Jennifer Wheeler
My Life My story is simple: I am a single mom. I have three sons. They have autism. Yes. All of them. And I have been raising them alone since my youngest was just three weeks old. Even though they share the same diagnosis, autism spectrum disorder, they are affected in very different ways. My 6 year old takes anxiety meds and will only wear purple shirts. My 4 year old cannot gauge where his body is in space. And my 3 year old cannot recover from a meltdown in under 15 minutes. It isn’t easy, but they are mine. So I strap on the superhero cape and rock the mommy job all day, every day.
Mother’s Day has always been my favorite day of the year. In 2002, I celebrated my first Mother’s Day by bringing my firstborn home from the hospital. In 2004, I celebrated another Mother’s Day by bringing my second son home from the hospital. And, in 2006, I "celebrated" yet another Mother’s Day by asking for a divorce. But none of those days counts as the day that changed my life forever. That distinction goes to Mother’s Day 2007. Early in May, my best friend and her son (my godson) came over to visit. One pizza, two Disney movies and three bedtime stories later, all was quiet in my house. In only a few short moments, there was an eruption of crying from my sons’ bedroom. I walked in to find excrement smeared all over the bedding, the floors, the toys, the drapes, and the walls. My sons had been finger-painting with their own feces. My friend and my godson gave the boys a bath while I bleached the room, removed the curtains, and changed the bedding. Together, we managed to clean up the mess and get everybody back to bed before midnight. But that was with three of us. A few days later, I celebrated Mother’s Day by doing what I normally do every other day of the year: cooking, cleaning, and caring for my children. That evening, however, I found a new feces art project in their bedroom: 4-feet-high and 12-feet-wide. I couldn’t believe this was happening, again, on Mother’s Day. How was I going to clean this up all by myself? I went into the kitchen, grabbed the Clorox and the paper towels, and I cried. Like a baby. Sobbed, actually. In that moment, I was unsure how to cope. I was crying and crying and crying because I was tired and they were tired and their room smelled foul and I had just cleaned up this same mess a few days earlier. And I realized all of a sudden that this was my life. Happy Mother’s Day to me. In that moment, I wasn’t complaining or feeling sorry for myself. I was simply noticing the reality of my situation for the first time. My life looked very much like I had imagined it would during the previous 35 years when I fashioned my dreams out of words and images: I had beautiful children, I had friendship and love, and I had security and success. But my life also seemed so foreign to me. I didn’t feel like a superhero just then. So I prayed instead. Hunkering down in a crisis and turning it all over to an unseen deity is not the first thing that would occur to me in my time of need—unless I have no other choice. And that night I had no other choice. Since it was Mother’s Day, I invoked Mary to intercede because I think she is brave, and I think that any mother who can watch her son die is worth knowing. I prayed for patience, peace, and help. I cleaned up that nasty mess and I was calm. Still crying, but calm.
But as I was crying, I walked into the bathroom to dress the boys and my middle son looked straight at me and said, "What happened, mom?" It was clear as day and, mind you, he can’t talk. But he said, "What happened, mom?" and then my oldest son said, "Kiss’ll make it better …" and then I was crying for new reasons. My sons spoke. My sons knew I was sad and cared. So I dried them off in the darkness and dressed them again and crawled in bed with them. They covered my face with kisses because I was still crying and offered me Band-Aids to make the crying stop. They proved that some autistic children can register pain and can register sadness and can do something about it. But then, as sleep almost overtook me and as the kisses almost wore off and as I had almost forgotten what life was like for a single mom with three autistic children, I heard in the dark, "Purple shirt, Mom." So, I got out of bed, went to the closet, found my son’s purple shirt and I dressed him again. Get Your Conference Preview Here: Day One
|
 |
Jed Baker, Ph.D. |
After enjoying a complimentary continental breakfast, attendees will start their Friday morning with nationally renowned keynote speaker Jed Baker, Ph.D., author of the new book No More Meltdowns: Positive Strategies for Managing and Preventing Out-Of-Control Behavior. During his presentation, “No More Meltdowns: Social Skills Training & Positive Behavioral Supports,” Dr. Baker will describe how to handle meltdowns and design effective behavior plans to prevent these moments and reduce frustration and anxiety. In addition, he will describe strategies to motivate students to learn, generalize, and make friends.
At the conclusion of this presentation, attendees will be able to choose between the OAR-Sponsored Research track, in which OAR-sponsored researchers report on their specific research projects, and the Research to Practice track, with presentations describing how families and professionals can use current information to help those whose lives are affected by autism. Attendees will be free to shift from one track to another throughout the conference.
OAR-Sponsored Research
The first presentation on the OAR-Sponsored Research track, “Joint Attention Intervention in Young Children with ASD,” will be presented by Jennifer Durocher, Ph.D., BCBA, assistant director at the University of Miami / Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD). An important hallmark of early development, the ability to respond to and initiate joint attention is frequently impaired in children with ASD. This presentation will provide an overview of the outcomes of a joint attention intervention for 40 children with autism spectrum disorders (ASD) between the ages of 2 and 5 years.
Dr. Durocher will be followed by Carla Mazefsky, Ph.D., and her presentation “Psychiatric Comorbidity in Children and Adolescents with High-Functioning Autism and Asperger’s Disorder.” Dr. Mazefsky, assistant professor in psychiatry and pediatrics at the University of Pittsburgh School of Medicine, received an OAR grant for her study regarding the presentation and prevalence of comorbid psychiatric disorders in 10 to 17 year olds with high-functioning autism. She will give strategies to help to differentiate comorbid disorders from autism spectrum symptoms, including using self-report instruments.
After a brief lunch break, the OAR-Sponsored Research track continues with “Teaching Flexibility: The Development of an Intervention for Children with ASD” by Laura Anthony, Ph.D., and Lauren Kenworthy, Ph.D. Both Dr. Anthony and Dr. Kenworthy are assistant professors at Children’s National Medical Center (CNMC) at George Washington University School of Medicine & Health Sciences (GWU). Learning and behavior is affected by executive functioning problems common with individuals on the spectrum. This presentation will discuss the creation of an intervention to address the core executive functioning component of flexible thinking, while also building other supporting skills.
Janet Graetz, Ph.D., assistant professor in human development and child studies at Oakland University, will present the last session on this track, “The College Experience for Individuals with Asperger Syndrome.” In her research, Dr. Graetz collected weekly surveys and assessments regarding study and learning skills, peer involvement, stress-management, and others from college students with Asperger Syndrome. As a result of the study, attendees will discover how to promote the college experience for students with Asperger Syndrome.
Research to Practice
Running concurrent with to the OAR-Sponsored Research track is Research to Practice. OAR Scientific Council member Samuel Odom, Ph.D., offers the first presentation on this track, “Identifying Evidence-Based Practices for Learners with Autism: Getting to Implementation.” Dr. Odom is the director of the Frank Porter Graham Child Development Institute at the University of North Carolina. In this presentation, he will first examine the processes for verifying the efficacy of scientifically based intervention practices, as well as describe the practices that researchers have identified across reviews. Also, he will examine and propose criteria for judging comprehensive treatment models and factors that appear to be associated with the implementation of such practices.
SungWoo Kahn, Ph.D., BCBA, a senior behavior analyst on the Neurobehavioral Unit of the Kennedy Krieger Institute, will present the next presentation, “Factors Affecting Parental Adherence to Treatment Recommendations.” In his talk, he will discuss a lesser-studied reason for the success of applied behavior analysis: parental adherence. Dr. Kahn will present research focused on improving parent’s adherence with behavioral treatment by identifying variables that might impede long-term success.
After lunch, the Research to Practice track will resume with a presentation from Erik Mayville, Ph.D., BCBA, titled “Evaluating Educational Programs.” Dr. Mayville, clinical director of the Institute for Educational Planning, will discuss the issue of educational appropriateness as related to individuals with ASD and will describe key aspects of programming to be reviewed in determining the appropriateness of education. He will also review the elements needed to understand students’ needs through clear communication with IEP teams.
Last on this track is “Functional Assessment in Community-Based Settings,” presented by Robert LaRue, Ph.D., BCBA, an assistant research professor at the Graduate School of Applied and Professional Psychology at Rutgers University. Functional assessment, one of Dr. LaRue’s major research interests, has been proven to make behavioral interventions more effective and efficient, although these procedures can be difficult to implement and take time and expertise use correctly. The purpose of this presentation is to discuss the philosophy behind functional assessment and outline alternative models of functional assessment that may be less labor-intensive than traditional models, yet still provide valid results.
 |
Daniel Openden, Ph.D., BCBA |
At the conclusion of both tracks, attendees will reconvene in plenary session for Daniel Openden’s, Ph.D., BCBA, closing keynote address, “Pivotal Response Treatment & The Development of Social Competence.” Dr. Openden, vice president and clinical services director for the Southwest Autism Research & Resource Center (SARRC), will answer questions regarding pivotal response treatment (PRT). During his presentation, Dr. Openden will demonstrate how a focus on pivotal areas can enhance the development of social competence in children with autism. In addition, he will describe methods for translating PRT into effective and accessible clinical practice.
A “Meet the Speakers” reception will immediately follow Dr. Openden’s presentation in the main exhibit area. Attendees and speakers will be free to meet, mingle, and discuss the day’s presentations and activities over hors d’oeuvres and beverages. All are encouraged to attend.
Please visit the conference section of OAR’s Web site at http://www.researchautism.org/news/conference for a detailed schedule, complete list of speakers, and full presentation summaries. To register or get more information, contact Alyssa Kruszyna at 703-243-9717 or akruszyna@researchautism.org.
A Teacher Talks About the Enjoyment and Benefit of Being “Student for a Day”
I hope to go to graduate school for either administration or early childhood as well as get a certificate for a BCBA (Board Certified Behavior Analyst). I am very interested in behavior and behavioral interventions for students with autism and want to be able to help families with challenging behaviors. Although I learn more and more every day from the hands-on experience of teaching in a classroom, there are days I miss being a student and taking an active role learning about the field of special education. Teaching children with autism offers its own set of challenges. There are standardized tests to assess how a student is doing in math, reading, and science, however, there is no formal assessment to acknowledge that a student was able to sit in her chair for 60 seconds in September and for 45 minutes in May. Along with this, there is limited material from the school system to teach these essential skills/life skills. The 6th Annual Applied Autism Research and Intervention Conference sponsored by OAR last October quenched my thirst for an opportunity to play student for a Saturday and be surrounded by the leading researchers in autism. The OAR conference touched on all different aspect of life for a student with autism, not just how to work with them between 8-4. Every specialist that I heard speak was dynamic, engaging, and furthered my desire to continue my goal of obtaining my BCBA. The design of the program allowed me to choose the lectures that were most applicable to the issues of the children I work with, which made the entire conference beneficial. Not only were the speakers eloquent and knowledgeable about their areas of research, they also took the time after their presentations to speak with me individually about pursuing my goals in the field. An additional benefit of attending the conference was that I was exposed to a plethora of resources that were available to purchase. I was able to purchase a book at the conference called Navigating the Social Worlds, which has helped me immensely throughout the year to plan lessons for my students on the autism spectrum. The conference also provided me with opportunities to listen to and meet some of the most influential people in the field, which serves as an inspiration to be a better teacher.I hope that more teachers have the opportunity to attend such an incredible event this year and experience feeling like a student again, and having the opportunity to hear some of the most intelligent and outstanding educators in the field of autism. The most helpful thing I took away was knowing that there is a network of people who have committed their careers and lives to helping people with autism and being able to be apart of that was very rewarding. Special education is not the most "sought after" field so it was wonderful to feel the power and wisdom of an entire conference room of people all there for the same purpose. The conference really helped me be a better teacher of social skills to students with autism who lack these necessary skills in the classroom and elsewhere. |
Since I graduated from college and began working as an educator in Fairfax County Public Schools, teaching young children with autism how to add, blend sounds, and appropriately transition from a preferred activity to a non-preferred activity has changed significantly. I enjoy my new role. Every day is a new adventure. Another wonderful part is that I am able to work directly with children and see the impact of my work through student growth. News from OAR
OAR and the Davis Family Honor Winners of the Jae Davis Memorial Award
Jae Davis was a mother of a child with autism and an advocate for individuals with autism spectrum disorders, who lost her battle with cancer in October 2003. Prior to that, Jae and her husband, Bill, were committed to raising awareness of autism and advocating for their son and others like him. They trained themselves in a variety of therapies and treatments and created an in-home autism-treatment program open to anyone. Additionally, Jae worked tirelessly to help set up internship programs with colleges in her town, Lancaster, PA, start home programs, and implement communication systems for families of young children with autism throughout Pennsylvania until cancer cut her life short.
Her service to others and the community led OAR to establish an award in her name in 2004 with the enthusiastic support of Jae’s husband, Bill, and her children, Danielle, Jessica, and Christopher.
In April and May, OAR presented two women who carry on Jae’s spirit in their work with the 2009 Jae Davis Awards for Community Service. On Monday, April 27, during the Blue Iguana Benefit for Autism in Fairfax, VA, OAR Executive Director Mike Maloney and OAR President Dr. Peter Gerhardt presented an award to Karen Driscoll, advocate for military families who have children with autism. A month later, on Thursday, May 21, Dr. Gerhardt presented the second award to Denise Resnik, co-founder of the Southwest Autism Research and Resource Center (SARRC), at a dinner in Phoenix, AZ, where SARRC is located.
Making Lemonade
. |
Dr. Gerhardt presents Denise Resnik with her award |
Denise Resnik’s story as a mother of a child with autism bears many similarities to those told by other mothers, and one the late Jae Davis might have shared not long after her son was diagnosed with autism. Autism has a way of changing lives, however. In the cases of Jae Davis and Denise Resnik after her, autism revealed two remarkable women whose legacy of service to the autism community extends far beyond their own families where their respective autism journeys began.
Like Jae and many autism mothers, having a child diagnosed with autism instinctively triggered Resnik into action. In her search for answers to questions about her son, Matt, and his diagnosis, she found few. There were no services or support to be found. She was told that she should consider institutionalizing Matt, but that was not an option. Resnik knew what she had to do. She began engaging with friends, doctors, and other families faced with the same diagnosis. Through their collaborative efforts and dogged determination, SARRC (Southwest Autism Research & Resource Center) began as a virtual research center (operating out of homes, businesses, and medical offices), setting its sights on not only answering questions, but questioning the answers. It offered insight, empowerment, and comfort to parents searching for information and hope and was quickly embraced by the community.
Today, only 12 years later, SARRC has grown to an 18,000-square-foot “Campus for Exceptional Children” where SARRC facilitates research studies, direct services, and training for children, family members, physicians, educators, professionals, and para-professionals. In 2008, SARRC program enrollment totaled more than 16,000. SARRC recently completed its 10,000-square-foot Vocational & Life Skills Academy, which provides community-based training and promotes employment opportunities for young adults and adults with autism spectrum disorders.
SARRCparticipates inpharmaceutical trials, directs its own clinical studies,and has been advancing its molecular and genetic studies withthe Translational Genomics Research Institute (TGen).SARRC consistently emerges as a leader in the recruitment and enrollment of subjects in multi-site studies and proudly partners with the Autism Genetic Resource Exchange, Autism Trials Network, and OAR.
Since its establishment in 1997, SARRC, under Resnik’s direction, has raised more than $35 million, primarily from Arizona sources, for the cause. Resnik isa member of the Autism Speaks Family Services Committee and has served as a managing partner of Autism Cares. She is also a member of the 2006 NIMH Autism Matrix Review committee and the 2007-08 NIH Strategic Plan Workgroup, a Family Services Committee member for Autism Speaks, and a Steering Committee member with Advancing Futures for Adults with Autism.
It is this body of life work, still very much evolving, that led Jeri Kendle, SARRC’s interim president and COO and friend for 24 years, to nominate Resnik for the Jae Davis Memorial Award for Community Service this year. Joining her in the nominating process were Dr. Raun Melmed, SARRC co-founder and medical director, and Howard Sobelman, chairman of SARRC’s Board of Directors and father of a young man with autism. Sobelman wrote, “As a father of a child with autism, I am grateful that Denise’s son, Matthew, is older than my son, Tyler, because I am able to benefit from the amazing trail that Denise has blazed for the rights, benefits, and respect for people with autism.”
Dr. Melmed summed up Resnik’s autism journey in a paragraph that reveals at once her energy, passion, and vision, “Denise’s son, Matthew, has autism. Talk about life serving up lemons. And Denise's response? Let’s start a center, build a building, attract great scientists, and start a research program! Let us lobby the state government, evaluate service models, and help orchestrate a national response and search for cures. Let’s create programs to educate teachers, doctors, and police officers. Let’s tell the community that their response to the crisis of autism is vital and that care for the most vulnerable members of our society really matters. Let’s enhance the quality of life for those affected by autism in clear and measurable terms. SARRC was born out of that sense of passion and commitment; from lemons to a vision of lemonade. Giving voice and choice to thousands of parents and their children mired in despair.”
It is clear for anyone to see that Jae Davis and Denise Resnik were cut from the same special cloth. Using Denise Resnik as a measure, one can only imagine what Jae’s legacy might have been had she lived a full life. Matching Davis’s qualities and lifework with Resnik’s, one sees two remarkable women and mothers with the rare capacity to look adversity in the eye, face down the odds, and selflessly give of themselves for the benefit of others.
As he presented the award to Resnik, Dr. Gerhardt echoed the praise from Kendle, Sobelman, and Dr. Melmed, offered congratulations from the Davis family and OAR, then read the inscription on a framed certificate that accompanied the award:
The Organization for Autism Research proudly presents the
2009 Jae Davis Award for Community Service to
Denise Resnik
Co-founder, Southwest Autism Research & Resource Center
Mother, Leader, Visionary for All Things Possible
In recognition of her exemplary service to the autism community.
Reaching Out Her Arms
. |
Karen Driscoll poses with her husband Jerry, OAR Executive Director Mike Maloney, and OAR President Peter Gerhardt, Ed.D. |
Jae Davis “reached out to put her arms around other parents of children with autism” both literally and figuratively, said OAR Executive Director Mike Maloney as he asked Karen Driscoll and her husband, Jerry, a Marine, to join him, Jae’s husband, Bill, and OAR President Peter Gerhardt at the front of the room where the first Blue Iguana Benefit for Autism was taking place.
Like Jae Davis, Driscoll has reached out her arms to support families who have children with autism. When Driscoll, whose husband is a Marine, learned that her son, Paul, now 11, had autism, she did exactly what Jae did--plunged herself into learning everything she could about autism.
In 2005, though, the Driscolls received a letter from the insurance carrier, Tri-Care, explaining that its new program, Enhanced Health Care Option, ECHO, was terminating Paul’s coverage for ABA. “ECHO began strictly enforcing a policy requiring all individuals providing hands-on services to be board-certified behavior analysts,” explains Driscoll. “Finding a certified BCBA to deliver hands-on services is nearly impossible.”
Driscoll soon discovered that her family was not alone--thousands of families were affected. That reality—that military families with spouses literally sacrificing their lives for their country could not get coverage that would enable their children to lead healthy productive lives—galvanized Driscoll. From being a concerned and loving mother, she became a tireless, passionate advocate on behalf of military families who have children with autism.
She networked with other military families and worked with them to coordinate efforts. She met with military leadership, prepared papers, and briefed professional staff on Capitol Hill and members of Congress.
The problem is not lack of support. Driscoll and the other military parents she works with have the support and active advocacy of senior military leadership. The advocacy efforts of Driscoll and other military parents did work. In 2007, Congress passed the National Defense Authorization Act, fiscal year 07, which required TriCare to solve the problem. TriCare’s “solution” to the problem, however, created a program so complex that no providers signed up.
Driscoll, the coalition of parents working with her, and the advocacy groups that support them believe that Congress and the Secretary of Defense need to direct a federal solution and recognize the medical necessity of autism treatment, specifically ABA therapy. She and other parents have met with a number of legislators, explaining their dilemma.
Driscoll doesn’t plan to rest until every child with ASD in a military family gets the treatment he or she needs. “It’s heartbreaking to think that this issue is affecting those people we are sending overseas to fight for their country. It is an issue that deserves immediate and aggressive intervention by Congress.” If Karen Driscoll has anything to do with it, that intervention will happen.
That coupling of determination and compassion exemplify the spirit of Jae Davis. As Dr. Gerhardt said as he presented a framed certificate to Driscoll, “you are changing the world and we are grateful to have you.”
Major John Krausse, representing the office of the Commandant of the Marine Corps, also spoke about Driscoll. He read a message from General James T. Conway, Commandant of the Marine Corps, which included this: “This honor is well-deserved due to your commitment to Marine families who have children with autism. Your reputation speaks to the high quality of Marine spouses and families.”
First Blue Iguana Benefit for Autism “A Grand Success” Says OAR Executive Director
On April 27, 32 OAR supporters and staff gathered at the Blue Iguana restaurant in Fairfax, VA, to enjoy a fine three-course meal, take advantage of a silent and live auction, and honor Karen Driscoll, one of two 2009 Jae Davis honorees (see the story on the honorees above). By the end of the evening, OAR had raised $7,000, making the evening a success on all counts, reports OAR’s Executive Director Mike Maloney.
The first Blue Iguana Benefit for Autism was the idea of Blue Iguana assistant manager Dave Clark. His bosses, co-owners Tom Chakeres and Bill Loukas, who have been OAR supporters since OAR’s first golf tournament in 2003, readily agreed to host the event.
OAR Board Chairman Jim Sack’s law firm, Sack, Harris, and Martin, P.A., and OAR supporter Steven Chernoff’s firm, Lukas, Nace, Gutierrez & Sachs, LLP, sponsored the dinner.
Several OAR friends donated items for the auction, which was enjoyed by all.
“The dinner was a wonderful way for us to recognize one of our Jae Davis award winners, raise money for our work, and enjoy the hospitality of the Blue Iguana,” Maloney says.
It’s Show Time
High School Senior Produces Talent Show to Raise Money for OAR
Producing a talent show, says Alvin (Texas) High School senior Brittany Lewis, was “right up my alley.” As a long-time dancer and the top officer of her high school drill team, Lewis was excited about her idea to create a talent show. That could have been it: A fun time and a good show. But Lewis was intent on making the show much more than that. She also wanted to raise money for a good cause.
She came up with the idea to do a talent show as her National Honor Society service project in the summer of 2008. She was very happy, she says, that creating a show could also raise awareness about autism and disabilities in general as well as raise money for a good cause.
Lewis found OAR through online research. “I wanted to know more about the different charities I was considering donating the money to. OAR was the only one to e-mail me back. If OAR was willing to take the time to give me more information, then it deserved the money I raised.”
After talking over the idea with Ben Fiedler, the school’s NHS advisor, she began work, settling on a date the school auditorium could be used and publicizing the show to her fellow students. The talent show took place on January 31, 2009. Ten acts sang and played music for the audience of fellow high school students, teachers, parents, and neighbors. At the end of the show, Lewis had raised almost $1,000 for OAR.
Lewis raised money by charging potential acts an audition fee and selling tickets to the show. She recruited fellow members of the National Honor Society and her friends to help. They passed out registration forms, sold tickets, made signs, and passed out programs.
Deciding on OAR and finding out more about autism has turned Lewis into an advocate for those with disabilities. “Raising awareness was not just about spreading the word about autism but acknowledging it and learning how to treat people with autism and other individuals with disabilities. We have to learn how to accept them as functioning members of our society because they are very well capable of contributing to our communities. Organizations like OAR are the helping hands the children need.”
RUN FOR AUTISM News
Want to Rock Out? Then Roll for OAR at a Rock ‘N’ Roll Run
OAR’s RUN FOR AUTISM is entering its second year as a charity partner with Elite Racing, Inc.’s Rock ‘N’ Roll Series, whose events are held in cities across the country. The highly successful events are true to their name with races that include a band every mile along the course and a headliner concert to cap off the day. OAR teams will participate in Rock ‘N’ Roll events in June in San Diego and the inaugural Rock ‘N’ Roll in Seattle.
OAR will have a major presence with an expo booth and finish line tent at several races this year, including the new Rock ‘N’ Roll Chicago Half Marathon on August 2, the Virginia Beach Half Marathon, which has become a Labor Day weekend fixture for many runners, on September 6, and the San Antonio Marathon on November 15. The Rock ‘N’ Roll Chicago Half should prove to be especially exciting since OAR already has a large team for the Bank of America Chicago Marathon and is a well-known program among runners.
OAR has already had participants in the early season events that took place in Phoenix (see RUN FOR AUTISM News in the April OARacle) as well as Country Music in Nashville.
“Adding the RUN FOR AUTISM to our series as a charity partner allows participants of our events the opportunity to dedicate their run to an additional cause,” says Dave Hussa, director of charity relations for Elite Racing, Inc. “Also, since the RUN FOR AUTISM is involved in other high-profile races throughout the country, our Rock ‘N’ Roll events benefit from the partnership when they promote their programs at race expos during the year.”
Doug Marocco, director, RUN FOR AUTISM, notes, “Since we became involved with the Rock ‘N’ Roll Virginia Beach Half Marathon and San Antonio in 2008, the exposure of the partnership and demand for the events has generated significant interest in our program from across the country. The series allows OAR to reach runners in many states who want to RUN FOR AUTISM in a race either a short distance from their house or in a destination location.”
For more information on the Rock ‘N’ Roll Series and how you can RUN FOR AUTISM at one of their events, go to: www.researchautism.org/news/run/races/RNR.asp or e-mail run@researchautism.org.
OAR Tri’d It and We Like Our TRI FOR AUTISM
The Virginia Triathlon Series (VTS) has partnered with OAR for the third straight year to provide the basis of the TRI FOR AUTISM program. The VTS has helped raise over $50,000 for OAR by allowing participants to race using reserved charity entries in exchange for a direct donation or a complimentary entry to promote their fundraising effort.
. |
| OAR's own Doug Marocco, director, RUN FOR AUTISM, takes part in one of the Virginia Triathlon Series events. |
Introduced in 2005, The Virginia Triathlon Series has become widely popular on the East Coast with over 10,000 athletes competing in races across the state of Virginia. Race Director (and series owner) Greg Hawkins (Find out more about Hawkins below) collaborated on the idea with RUN FOR AUTISM Director Doug Marocco, who had competed in many of the original VTS events and has an elite-level triathlon background. The two saw the program as a natural addition to the RUN program. Marocco invited Hawkins to OAR’s Runners’ Recognition Dinner the night prior to the 2006 Marine Corps Marathon and to the Finish Line tent on race day to “feel” the charity program experience.
Hawkins was sold on the idea. “The spirit and sense of purpose of the OAR runners I met was incredible.”
OAR became the official VTS Series Charity the following year and the series has continued to grow from nine venues in the first season to 20 separate races in 2009. The classic Virginia events are back, including Kinetic, Culpeper, Patriots, and Big Lick, as well as new races in Lake Anna and Blacksburg. OAR triathlete Sheila Jordan has already signed up for several events and Kirby Hamilton is also back to support OAR. In addition, numerous athletes will support OAR through the course of the season by purchasing charity entries for sold-out events.
In addition to the VTS, TRI FOR AUTISM also welcomes any triathlete who will be participating in a triathlon anywhere to raise money with their effort. This year, alumni runner Stephen Marty, who has participated for OAR at the Marine Corps Marathon and NYC Half Marathon the past two years, will be doing the Beach 2 Battleship Half Ironman in North Carolina on November 7 this year as his goal race. Another runner, Sabrina Strudell-DeBerry, will participate in a number of races in Texas. Dylan Morgan-Blahetka, OAR’s youngest competitor at 12, will be doing the McKids Triathlon in Chicago this August, while Luise Easton will celebrate her 70th birthday by doing the Swim from Alcatraz.
Marocco notes, “The same qualities that are part of the RUN program have carried over to triathlon, although currently in a much smaller way. However, our triathlon events allow another opportunity for athletes of all levels to bring awareness and raise money for autism.” OAR wishes good luck to everyone who has decided to TRI FOR AUTISM!
To find out more about team members and make donations to their efforts, go to www.firstgiving.com/oar
For more information on the TRI FOR AUTISM program go to: www.researchautism.org/news/run/tri/index.asp
The “Teal Team” Does OAR Proud at the Marine Corps Historic Half
In only its second year, the Marine Corps Historic Half marathon has become a major event on the spring runner’s calendar with participants coming from 46 states and seven countries. OAR fielded a team of 22 runners who used the Historic Half or its accompanying Semper Fred 5K race as either their primary fundraising effort or as a kickoff leading up to their participation in the Marine Corps Marathon later in the year.
Meet Historic Half RUNner Aaron Church Aaron Church began running as a high school freshman in Roanoke, VA, but set aside the sport to play tennis for James Madison University. Why did he decide to run the 1999 Disney Marathon and renew his relationship with running? "More than likely, it was a Kona Ironman special on television” that renewed his interest in running, Church wrote in an article on the Washington Running Report Web site. “I decided to dust off the laces after not running for five years and started very slowly, at 10:00/mile pace…I signed up with the Runners' World 3:50 pace group and stayed with them at the 1999 Disney Marathon until mile 20. At that point, I said, 'Wow, I am going to finish this race.' So I picked up the pace and shaved seven minutes off 3:50 in the last ten kilometers to finish in 3:43." Church has already posted big results for 2009 with a runner-up positions at the Walt Disney World Marathon in January followed with a top finish at the National Marathon just two months later. Church joined the RUN FOR AUTISM team in 2007 to help raise awareness for the cause. |
For the second consecutive year, Tim Young, of Fredericksburg, VA, was the top finisher. OAR runner Aaron Church, of South Riding, VA, chased close behind for a second overall finish in a field of 5,000 finishers with an outstanding time of 1:10: 05. Church, a former Olympic Trials Marathon runner, first participated with the RUN FOR AUTISM team in 2007 when he helped pace a group of co-workers to qualify for the Boston Marathon. He has continued to support OAR and create awareness of the RUN program since then. (Read more about Aaron Church to the right.)
Along with Church, alumni runners Tom Steinbach and Stephen Marty returned, among others. Past team member Russ Stockton returned to run with his wife, Beth, who ran the Historic Half for the first time.
New RUN FOR AUTISM runners included David, James, and Diane Long; Margarita Cianchetta, Kauren Nordstrom; Heather Hanson; Allison Kennedy; and Diane West. Other “teal team” members were Jan Branscome, Karen Herbert, Patrick Grant, and John Ferguson, all of whom plan to be part of the teal team at a fall event for OAR.
Tiffany Smedley, who drove up from Powders Springs, GA, and long-time OAR conference attendee Janet Usala from Annadale, VA, together raised more than $2,500, making them the team’s top fundraisers and the Historic Half a fundraising success.
For more information about joining the team at another event this year, please go to: www.researchautism.org/news/run/index.asp or contact us by e-mail at run@researchautism.org or by phone at 1-866-366-9710.
How Greg Hawkins Found the “Coolest Job on the Planet”
. |
Greg Hawkins enjoys race day and the "coolest job on the planet." |
Greg Hawkins intended to be a chemist. In fact, after majoring in chemistry in college, he did work as a medicinal chemist for seven years. Then he had the chance to marry his passion for triathlons and his career when he became SetUp Events director (and series owner) for its Virginia Triathlon Series, which sponsors OAR’s TRI FOR AUTISM as its official charity program.
“I like to think that I have one of the coolest jobs on the planet,” says Hawkins. “I worked operations part time for Set Up Events in college and while I worked as a chemist. I was fortunate to be in the right place at the right time to start a franchise and I have never looked back.”
Hawkins is one of those lucky people whose jobs are not so much labor as fun. When he writes about being a triathlete, he puts “SO MUCH FUN” into capitals. “The group workouts, solo miles, cool gear, and great people are not so much what got me into racing, but they keep me here. I meet interesting and cool people every day and at every race.”
Some of those cool people are competing in triathlons to raise money for OAR. “It’s such a worthy cause. Meeting the parents of kids with autism and the kids themselves has been such a moving experience that I want to do all I can to help support OAR’s mission,” Hawkins says. “The fact that OAR’s mission is not just about finding a cause, but helping families to better cope and grow while raising a child with autism is very admirable.”
“Necessity is the mother of invention” explains how Hawkins came to be a triathlete. “I got into racing because I didn’t have a car. In high school, I ran cross-country and track, rode my bike to school six miles each way, and worked as a lifeguard.” When he saw an ad for a triathlon, he though it would be fun. He was hooked, he says, after he placed third in his age group in that first event.
Today, Hawkins’ workout routine involves more time pushing his kids in a jog stroller than it does training for triathlons. But he does still run three times a week and does pushups every day.
As the guy behind the scenes in Virginia, Hawkins says his favorite day is “race day when everything that I have been working on for a year comes together and people have a great race.”
Profile: A Forceful Solution to Providing Autism Answers
State Task Forces Pave the Way for Effective, Efficient, and Enhanced Delivery of Services
For State Representative Cam Ward, the rising incidence of autism is personal. His daughter, Riley, 7, has been diagnosed with an autism spectrum disorder. But Ward has taken autism out of his house and into the statehouse. As he said when he formed the Alabama Autism Task Force in 2007 with Lt. Gov. Jim Folsom, autism should be considered an epidemic and all the procedures, services, and support provided for an epidemic should be given to those who deal with the diagnosis.
He’s not the only one who thinks so. Several states across the country, including Alabama and Pennsylvania, have created task forces to look at autism in their states and how services can be delivered more effectively and efficiently.
. |
Representative Cam Ward |
The state of Pennsylvania was one of the first to create a task force, driven by Estelle Richman, Secretary of the Pennsylvania Department of Public Welfare, and State Representative Dennis O’Brien. Created in 2003, the task force was comprised of over 250 family members of people living with autism, service providers, educators, administrators and researchers. Those members were charged with developing a plan for a new system for individuals living with autism and their families that “would make Pennsylvania a national model of excellence in autism service delivery,” according to the task force Web site.
In Alabama, a couple of years later, Ward, state representative and father of a daughter with autism, looked to Pennsylvania for that exact modeling. Made up of state officials, educators, doctors, and members of the academic community, the task force has recommended ways to improve the treatment of autism in Alabama.
Driven by the recognition that the needs of children with autism are a growing concern and that those children will one day need adult services as well, state task forces, like those formed in Pennsylvania and Alabama, have created systems to build the capacity of state government to serve the needs of people with autism and their families.
Pennsylvania
“The document that came out was a really strong representation of the concerns and priorities of the communities that deal with autism,” explains Nina Wall-Cote, director of the Bureau of Autism Services in the Pennsylvania Department of Public Welfare, a bureau that was created in 2007 through a task force recommendation.
Rather than dealing with numerous groups and individuals, the task force brought everyone together to create a comprehensive blueprint of what needed to be done. In her role, Wall-Cote says that blueprint is invaluable. “I came into the position [having served as one of three co-chairs of the task force] with a mammoth challenge and a deadline of yesterday. Having a blueprint gave me a list of priorities to work on.”
In Pennsylvania, Wall-Cote said the most substantive success of the task force was the creation of an adult autism Medicaid waver specifically targeted to address the needs of adults with autism. “That waiver allows us at the bureau to bring adults with autism into a model that focuses on their specific needs.”
. |
Nina Wall-Cote, Director, Bureau of Autism Services |
The task force also recommended that the bureau Wall-Cote now heads be established as a state government agency. While the bureau only works with Medicaid services, not educational services, its official status has given the bureau the ability to collaborate with, for example, the state’s department of education and the state mental health department, which oversees wraparound services. “Being an official ‘block on the organizational chart’ has given us a way to work with other state agencies and organizations,” Wall-Cote explains.
Pennsylvania also set up regional centers that can assist local organizations in their areas, collaborate with those organizations and the other regional centers, and do research and provide training for local organizations. The regional centers also channel information outward—pulling together experts in the regions who can collaborate with experts in other regions. “The regional centers, which may be based at a hospital, university or similar site, act as the hubs of regional wheels,” describes Wall-Cote. “They are our arms out into the state, which is huge with a lot of rural areas. We are using the centers to create an infrastructure and mechanism to collaborate within and across regions.”
Alabama
Alabama’s task force met over a period of two years and issued its final report in 2008. In April, the state legislature passed the Riley Act of 2009, named for Ward’s daughter, which calls for implementation of many of the task force’s recommendations. Ward led efforts to push the bill through the House and State Senate. The bill will set up a statewide council on autism and allow for hiring a state autism coordinator. Ward modeled his bill after the one in Pennsylvania.
“There are nine agencies in the state that actually provide services for people with autism,” Ward explains. “Sometimes they work together, sometimes they duplicate services. The problem is, they don’t always talk to each other. This bill creates a council that will have on it a member from each of those state agencies to help coordinate the work they are doing.”
The council will also oversee all autism policy in Alabama.
The Act is inspiring not only for what it will provide to Alabama families and individuals with autism, but also for what it represents in terms of cooperation. “Because autism is a lifelong condition and because there are a range of diagnoses along the spectrum, it can lead to groups with very narrow interests that often work counterproductively,” Ward explains. “The task force gave us a way to bring everyone under one umbrella so they could work together. Lt. Governor Folsom represented Democrats and I represented Republicans. We have Medicare and Medicaid representatives on the task force. Having everyone represented on the task force is what allowed us to create a comprehensive set of recommendations.”
The task force looked at other state models and drew best practices from their efforts, says Ward. “That’s going to put Alabama on a par with and hopefully much better than the rest of the country. We will be able to provide better and more coordinated services to our families as a result.”
 |